05, 2011

The woman who lived in the bed next to me on the right had caught my eye the first day I came to Ward 4. As the days passed, I spent more and more time watching her. She was about sixteen years older than I, her facial characteristics were different from mine, and she was taller. But in other ways she was my physical duplicate. Her name was Theresa Ladue.

Theresa, too, was a victim of cerebral palsy. Like me, she could make sounds but couldn’t speak, and had limited movement of her arms and legs. The first time I saw her, I knew that inside Theresa’s crippled body there was a sharp, alert person. I saw it in her eyes and heard it in her voice. Within a day or two, I realized that lying next to me was the first person I had ever seen who matched me closely in abilities and disabilities. Watching Theresa showed me how I must look to other people. But what fascinated me most was the challenge of discovering what kind of person lived behind those unmistakably intelligent eyes.

My first clue that Theresa was unlike the others on the ward was that she constantly studied what went on around her. Along with this, I noticed that her sounds weren’t just random noises; they indicated her moods and responses. Since this was precisely how I used my own sounds, I picked up on it right away. As I watched her more carefully, I saw that Theresa was watching me too. In fact, she was directing many of her sounds at me, looking for a response in kind.

After several days Theresa and I let our defenses down and stopped sneaking looks at each other. We began to gaze steadily at one another, making sounds to enhance the process of becoming acquainted. I would watch Theresa and she would watch me right back — not in a hostile way, but with friendly curiosity. As we became more comfortable, we began to “talk” to each other more and more through sounds and facial expressions. Before long we were sharing our opinions and feelings about living on the ward.

Late one night during my second week there, Theresa and I were engaged in a silent conversation with our eyes. Most of the residents were asleep, and it was quiet. Although the ward lights were off, we could see each other’s faces from the light in the hall.

Suddenly a remarkable spark passed between us, something that no one watching us would have been able to perceive. Theresa and I experienced it simultaneously: a riveting, deeply moving flash of complete understanding. At that moment we became aware of the extraordinary insight we shared, knowledge that no one who was not just like us could possess. Both of us were painfully aware of what it was like to be trapped inside a body that followed few directions of its mind and ignored the simple commands of speech and movement that nearly everyone takes for granted. We knew what it was like to be unable to express even one thousandth of the thoughts whirling inside our minds; what it was like to be unable to walk, or even feed ourselves; what it was like to be treated by most people as an oddity, a quirk of nature to be gawked at and given a wide berth; and what it was like to live on Ward 4 of the Infirmary at the Belchertown State School in 1962.

We both knew what all of this was like — completely.

As our mutual recognition of that knowledge emerged, our souls embraced. Our eyes locked for several exhilarating, magnetic, timeless moments. Then Theresa turned her head and nudged the yellow teddy bear lying beside her pillow. Making quiet, gentle sounds, Theresa repeated this gesture several times until she was certain I understood. By indicating her teddy, the only object of affection around her, she was telling me that she liked me very much, that she was beginning to develop a profound understanding of me.

At this, my face lit up in delighted verification. I responded with loving sounds of my own, and raised my eyes in an emphatic “Yes!” to make sure Theresa understood that I felt the same way about her. At that instant Theresa figured out what none of the staff would decipher for several years: that I raised my eyes to say yes.

From that moment on, Theresa and I were close friends. We took advantage of every occurrence on the ward — movements, feedings, changing, noises, outbursts, periods of total boredom — to exchange glances, facial expressions, and sounds. In this way we developed our own special language, evolving it slowly over a period of three or four months. After countless hours of careful study, we were able to fashion a basic, yet effective, system of communication.


Often we failed in our attempts to communicate. By the very nature of our conversations, Theresa and I couldn’t always tell whether a message had been interpreted correctly. Even when one of us signaled that we got the point, it was still difficult to be sure. We relied on eye contact and intuition to confirm our messages. Sometimes an unmistakable sixth sense told us that the communication had been successful, but there were many times when, after endlessly repeating a message, one of us could tell that the other one didn’t know what the hell we were talking about.

Half the battle was to keep the topic of conversation within the limits of what we reasonably could expect to tell each other. For example, it would have been impossible for me to tell Theresa exactly what had happened with the lobster at my tenth birthday party. But if Mother mentioned something in a letter about my birthday, I could tag that with an expression or sound and comment later on the general subject of birthday celebrations at home.

Another factor to consider was that the more we talked to one another, the more we honed our understanding. Call it intuition, nonverbal communication, ESP, or whatever, but there were occasions when we stared into each other’s eyes and communicated messages without making any sounds, expressions, or signals of any kind. In these instances our eyes did all the talking… and all the listening too.

Theresa had lived at the State School for eight years when I arrived, and she helped me through the initial shock of the woeful scene on Ward 4. in return, I eased her pain and frustration by sharing the experience of being abandoned among thirty confused and suffering women while denied the opportunity to speak, move, or be recognized as possessing even a shred of intelligence. Together, we at least attempted to overcome the fear and frustration that filled our days. It didn’t matter that sometimes we couldn’t understand each other’s messages, or that there were some things we could never tell each other. What mattered was that we each had someone who was trying to understand, someone deeply interested in our feelings and willing to share those feelings totally.

Ruth Sienkiewicz-Mercer, I Raise My Eyes To Say Yes

This expresses better than anything I’ve ever seen, what it’s like to meet someone who shares your physical and/or mental systems so exactly (in a world where nobody does), and what it’s like to establish a form of genuine, un-staticky communication with that person. Both of the people involved were diagnosed with profound intellectual disabilities and presumed to have pretty much no inner life at all, and left to lie there all day on beds in a large institution with no outside stimulation. That they presumed others unlike them didn’t have much of an inner life either… unfortunately that happens more often than not when people honestly believe that the assumptions made about them are wrong about them but right when made about other people. But other than that one quality cropping up a lot, this book is excellent at showing what it’s like to carve out a life for yourself in a place where practically nobody thinks you have any significant inner experience of the world or contributions to make.


Beyond Empty Shells


Documenting some of the worst of disability prejudice -- the idea that some of us are "empty shells" -- and the reality behind that illusion.

Expect awful, nightmarish quotes, as well as wonderful quotes from people who really get things right, and interesting quotes from people who make you think..

For more details, see About.

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